Our brother/son Sam along with his fiance Sarah and their two and a half year old son have had their world both blessed and turned upside down with the arrival of their identical twins Ava and Eleanor. The girls were born 9 weeks premature after a scan revealed medical complications at 30 weeks. Eleanor suffered a grade four hemorrhage in utero which has caused severe brain damage to the right side of her brain and compromised the left, as such they are now facing a future of uncertainty and ongoing medical assistance. The goal is to have some funds available for Sam and Sarah when they need it to cover the gap fees for her treatments. The current prognosis for Eleanor is moderate to severe Cerebral Palsy with complications including visual issues, movement issues, cognitive issues and potential swallowing difficulties and a possibility of epilepsy. Until such time a diagnosis can be made, and funding is made available to Sam and Sarah the financial burden is something we are wanting to help alleviate. When the diagnosis is made Eleanor will begin an array of treatment including physio, OT and speech therapy. A diagnosis of her condition can only be made at a point when she does not meet the milestones that Ava does as they both grow and develop. Due to Eleanor's brain bleed her CSF (cerebral spinal fluid) is unable to drain from her brain and she has developed hydrocephalus (an increase in brain fluid resulting in an enlarged head). To treat this condition she has had taps performed that drain the fluid to decrease the pressure on her little head. The future treatment for this is surgery to place a shunt that will drain the fluid from her brain into her stomach. Ava was growth restricted (IUGR) as a result of the event in utero and remains in NICU alongside her sister. She will be discharged when she can feed without a tube and gain weight. Her progress is slow at this point but promising. Sam is and has to remain working full-time which limits visits to the hospital to see the twins only on weekends. Sarah's days are hectic, running after their two and a half year old son and daily 2 hour round trips to the hospital to deliver milk and see the twins. In Sarah's own words please read a post she shared on Facebook that describes what happened the day their world changed... 25/6/19 The day our word literally turned upside down and spun our lives 360 degrees. I went for my routine scan of the twins at the hospital, and just like many times before I was always a little anxious. I was a day shy of 30 weeks, with fortnightly monitoring and started to get a little excited as I would be entering my last week at work and would have a few weeks before the twins would arrive. (There was always planned delivery around 35 weeks). What happened in the next few hours all became a fast approaching nightmare. I knew I was in trouble after the obstetrician took me to a consulting room and asked ‘if there was anyone else with me’. What followed was a history taking of the twins and then I was told that Twin A was growth restricted (not growing appropriately anymore) and also had some irregular blood flow when the heart relaxes. Ok, this we can handle- this we were briefed on so many times with these types of twins. The bombshell that followed next just left me internally paralysed. “That’s not all...we are really worried about Twin B”. It turns out Twin B sustained a grade 4 intraventricular haemorrhage (IVH). Cause unknown and even the obstetric team was shocked as these things usually occur ‘earlier’ in these types of pregnancies and not at 30 weeks gestation. I was sent for a whole array of monitoring, bloods and had an urgent MRI completed on the 27/6/19. Our follow up appointment on the 28/6/19 confirmed that Twin B has had a tragic event and was most likely due to the incidence of an acute twin to twin transfusion. The severity was explained to us, the bleed, the permanent brain damage and ventricles the size of 28mm on one side and 19 on the other (severe). We had lost all hope that Twin B has any quality of life following this discussion and our world took another turn into imagining what life might look for our precious Twin B and for us as a family. Our hearts are absolutely broken. Self doubt has kicked in and a lot of questions as to ‘should I have stopped work sooner?’, ‘shouldn’t I have done this or that?’ Have surfaced. But what I need to take comfort in is that this wasn’t caused by any of my doing.No one could’ve predicted or expected this to happen. Yesterday’s appointment confirmed that termination of Twin B is not an option and they will be both born together. Twin B will be rescanned after birth and a team of neurologists and neonatologists will consult with us about her future, potentially including palliation due to the severity of her brain injury. We are desperately praying that we will end up with a least one healthy child, we need Twin A to be strong and be a little fighter . It will be one long road of uncertainty, grief, tribulations and utter exhaustion. How do you ensure the needs of your family are met? Between your toddler, two premature NICU babies with an uncertain future and trying to look after yourself amongst it all? You just never know what is planned for your future, everyday is such a blessing. Healthy babies, children and adults are a blessing. We will get through this one step at a time, walking an unknown path of uncertainty. But we have to be brave, for us and for our babies. Working in paediatrics has shown me how incredibly strong and determined these beautiful little souls are, taking so much in their stride. Life isn’t meant to be perfect, it certainly hasn’t been so far- but this is our story. We have received some amazing support so far and are truly blessed to have so so many amazing people in our lives ❤️. From the bottom of our hearts- THANK YOU! Hug your little ones a little tighter they are such miracles We are seeking donations to assist our beautiful family financially with the uncertain future with their beloved Eleanor. Your donation will go towards early intervention for this gorgeous little girl to give her a quality of life that she deserves, by means of physio and any other service that she may require to achieve that quality of life. THANK YOU! For updates and to follow Eleanor's journey please find and follow Sam and Sarah on: INSTAGRAM - @itttstwins FACEBOOK - Eleanor's TTTS Journey